Symptom ~ Anybody have anything similar?

[kma]

Hi everybody!!

Starting a few months before my surgery, I started getting what I will call a strange sensation that until now, I never associated with my AN (I had my AN surgery in February 2009).  At the time, I went to my regular doctor and she gave me an x-ray and also did a blood test as she wanted to rule out MS.  Thank goodness it was NOT MS.  I have this sensation on and off since back then but now, it seems to be coming more frequently and so I called and scheduled an appointment to see the neurosurgeon that I met when I had my AN surgery.  I really liked him and value his opinion.  Before going to the appointment, I have to come up with a way to describe what is going on ~ I'm having a hard time coming up with a good way to describe it ~ so, I thought I'd run it past all of you to see if I sound crazy and if possibly any of you have experienced the same thing.

So ~ here goes.......

I get this sensation on the right side of my head ~ I am SSD but it's almost as if I "hear" a big puff or jolt in my deaf ear ~ kind of like an electric shock ~ though it does not hurt.  I feel it ~ like a buzz or ___________(this is the word I can't come up with) in my ear and on the right side of my face ~ NOW FOR THE WEIRD PART ~ at the very same time, I feel it ~ like a tingling or numbness down the length of my LEFT arm (yes, the opposite side).  It comes and goes really fast ~ just for a second and it's gone.  It will normally happen a few times in a row ~ usually I'll get them for about an hour and then it's gone.  Many times I notice it in the morning when I'm getting ready for work and/or when I get out of the shower.  Most often mornings but not always mornings.  Again, it does not hurt ~ it does freak me out and it is a really strange sensation. 

I promise I'm not crazy    Does this sound even remotely similar to anyone?     

Happy day!!

~Kathy

[Jim Scott]

Kathy ~

I'm sorry to have to state that I've never experienced the symptom you've described but I regret that you have to deal with this.  I trust that you'll be able to offer the neurosurgeon a cogent description of the sensations that can help him locate the source for your odd symptom - and resolve it, of course.  Please let us know the outcome of your doctor consultation.  Thanks.

Jim

[Pooter]

Kathy,

I don't think you're crazy..  I sometimes get that same buzz/jolt/_____ (insert indescribable sensation here) on my AN surgery side..  It's short lived and I most often get them at night.  Now, I don't get the associated numbness down the opposite side.  I've seen where others have described that also, so I just attributed it the the AN that keeps on giving.  While I don't know the exact cause, I suspect that it has something to do with one or more cranial nerves healing/regenerating or in some other way settling down from surgery.  I'm almost 2 years out and they definitely come on less frequently now than before.

I'm curious what your neurosurgeon says when you meet with him..  And, all I can say is that it appears to me to be perfectly normal (at least not abnormal) and discipates with time as things settle in..

Regards,
Brian

[cin605]

I had this also its almost like somebody plucked a string on an electric guitar in side your head?
I used to get it alot when i was about 6-10 months out.
I also would get a migraine shortly after.I looked it up and there is a thing called accoustic migrains,sometimes you hear just the sound other times you get the whole migrain.It would actually wake me from a deep sleep.
I do believe it all has to do w/ nerves fireing off.

[Lizard]

Funny you say this, because I've been getting this sensation for quite a while, and I've attributed it to stress and it usually happens when my ringing is extra loud, like my body's screaming SIT DOWN AND RELAX!!!
I always think I am the only one experiencing these symptoms and then I read about them...thanks for sharing and hopefully the doctor can find its source.
Liz

[epc1970]

Hi Liz
I get a similar, hard to describe sensation in my AN ear w/out the numbness. I get them mostly a night when I am settling down to sleep and as Brian mentioned I get them less, and less as time moves on from surgery and get the little shocks rarely now. I am also curious as to your surgeons response as to what this is-please let us know what you are told!
Erin

[cindyj]

I get the electric zap thing also, mainly when I finally settle down at night to watch some tv.  Still makes me jump when it happens.  Like Pooter, I've just always figured it was part of the healing process or the new rewired brain...Let us know what your doc says - sure he'll have some nice official medical words for the electric zap

Cindy

[Denise S]

Kathy, I had to reply and follow this post.  I  do get the ear/head thing on my SSD side 'sometimes'.     Only since surgery and since I'm only 4 months post op, I figured it was nerves healing, etc.    Does it ever come on when you where your BAHA?   Just curious.      Now I'm very curious are you going to see Pieper & what he will say.?  If so when?       

What size was your tumor??      I ask this because if it was a lot larger, it may have pressed on more nerves that can affect and cause numbness feelings to arms, etc.     Although, since you are so far out now, it don't seem like it would just be starting.     I have DEFINATELY found our brains, nerves, bodies and crazy, yet interesting!!!     

Cin605, Liz, Erin:    Are any of you guys also SSD?   Always nice to know if people with similar symptoms have same ??areas of comparison??? (sorry can't think of better wording)            Cindyj:       I assume you are SSD since your signature shows Translab, and I right?

Thanks for posting this Kathy!!    Best luck getting some answers or something 

Denise (MI)

[epc1970]

Denise
I am not SSD. I did have some mild hearing loss prior to surgery but did retain the hearing that I did have prior to surgery after surgery.
Erin

[kma]

Thanks everybody for your imput.   

Denise~  Yes, I am going to see Dr. Pieper.  Could only get an appointment that fits my schedule on April 5th ~ but that's okay.  I really value his opinion and I think it will be worth the wait.

Ya know, maybe it did have something to do with the size or position of my AN.  I still have never been told the size of my tumor.  Not sure why ~ maybe I'll ask Dr. Pieper if he has that info somewhere. 

When I went to Dr. LaRouere for my 1 year follow-up, he said my MRI showed "something".  He wasn't sure if it was tumor or scar tissue and we are waiting 6 months to do a follow-up MRI.  I wonder if new tumor or scar tissue could be causing my symptoms again.  I had always just assumed that because I didn't have any symptoms that I was aware of before my surgery that it wasn't the AN.  Hmm....maybe it is from that.  Interesting.

In regard to my BAHA, no, I've never noticed it while wearing the BAHA.....though right now, I'm not lovin' the BAHA so I don't wear it often.  I have been going and going for "tune-ups" on my BAHA and haven't gotten good result ~ so, end of this month I have an appointment with the Cochlear/BAHA rep and am hoping they can get it working well for me.   

Hey....one more thing.......has anyone heard of a hearing "aid" called Lyric?  I heard an ad for it on the radio this morning.  Haven't looked it up yet but I was curious if anyone had an opinion.

Week and a half until SPRING.......no snow, no snow, no snow!!!!  Happy day ~ Kathy 

[Denise S]

Kathy, you could even call medical records possibly at either dr. office, or go to the hospital you had everything done at.   You can get a copy of your MRI reports, surgical reports (from each dr. office).     The MRI reports before surgery will give idea of tumor size.      Also the more recent one will give more info. on how the radiologist read it.     Also be sure to see if you can get a copy of the MRI report and CD to go to Dr. Pieper too!   Then you can get his opinion too!        I've been dealing with brain tumor issues and multiple doctors and hospitals for 3 years now.   I find having my own copy of everything is the best.  Plus then I ask to get MRI CD's made anytime I'm going to the doctor who didn't originally order it.....make sense?

[Doc]

I'm going to get in the same line as Cindy and Pooter.  Like Cindy, I get zapped most frequently in the evening once I've settled down in front of the TV. Perhaps you can fill in that blank with "Vibration." The Electrical Shock I feel is often followed by a slight vibration that passes as quickly as it comes on. Like both of them, I've always attributed these "welcome" sensations as the brain / nerves wiring themselves as part of the healing process.  

As a side note.  I described these sensations to Dr. Gaye Cronin at the Atlanta Ear Clinic.  Gaye specializes in treating "our" shared condition. The first thing she said was to do something with the sensation...meaning quickly start puckering your lips for example if this is where you feel the "shock."  I've been following Gaye's recommendation. I can't say its helping any, but it certainly isn't hurting.

Take Care!
  
Doc

[Lizard]

Denise,
I am also not SSD, I was suboccipital, have only lost about 30% total, which is a blessing.  Sometimes I can't hear over the buzzing either, so it feels like I have less hearing. 


Kathy,
Please keep us posted.

Thanks for all the interesting input.
Liz